The following post is from Leah Bares, Laurel’s mom. Thanks to your generosity, love & support, we have provided targeted financial support to cover medical care needs associated with Laurel’s fight against cancer. – HSF
It has been 365 days now of a life teetering between loss, heartbreak and immense joy.
Laurel Pearl Bares is still fighting as brave as ever after being diagnosed on March 14, 2017 with one of the most aggressive forms of childhood cancers – Stage IV MYCN amplified Neuroblastoma.
I’ve thought about what I could write on her Cancer Anniversary for weeks now. This will surely not encompass everything, there are feelings too deep and wrought that I can never express. Here I will share some of my reflections of this past year and where we are at now.
To Recap the Medical Journey:
First, there were no warning signs. When you tell a pediatrician your 11 month old is acting fussy with food, having difficulty with sleeping, and acting cranky – they will likely dismiss your concerns and tell you that you have a normal 11 month old. So when I spent a week after she got her 12 month booster shots constantly calling the doctor’s office and making 2 emergency trips in to speak with our doctor to only be sent home twice with tylenol or benedryl with the advice, “make sure you keep her hydrated,” you can imagine my absolute shock of finding out the true meaning to her symptoms. (Sidenote: I have a lot of negative feelings toward said pediatrician. Call it displaced anger, call it being half Italian and Irish and looking for a fight. Maybe it’s the lonely law degree that is seeking out a battle. But in lieu of filing a malpractice suit against this dumb ass, I will write her a very colorful, gut wrenching letter along with pictures, charts, statistics, and it will all get out there.) My gut instincts as a mother led me in the right path. She reached a point where Brad and I said enough was enough. Going to the ER the early morning on March 13th, I never imagined that we would be rushed by ambulance from Plymouth to Boston.
And most of you know the story after getting to Boston.
I’m not sure what I did in those moments after finding out. That is the thing about trauma – you try to forget it or you replay your own version of it so much that it becomes false. I do remember spending weeks having on these boots with my legs and feet ached from leaning over Laurel’s crib in the ICU. I’m not sure how long I stared at her, willing to do anything for her to be healthy. I walked around the hospital without any contacts or glasses on because I couldn’t even acknowledge this new life. I slept in a window seat in the ICU ward pressed against the cold hospital glass with Brad’s body against mine. My world was over, I thought, and everyone went on living their lives.
Right when we were at our lowest point, Laurel started to show improvement. After the first round of Chemotherapy and the infamous Chicken Pox outbreak, Laurel came off the intubator. This ICU attending doctor (the one who I thought was a madman at first) took control of her blood pressure situation. He came onto the floor early and left work late because he was determined to stabilize our girl. And whatever he did worked. Laurel was able to come off the ICU floor and move onto the 6th floor Oncology Ward. We were then in quarantine for 10 days because of the Chicken Pox on the 6th floor. A nurse told us enough was enough and advocated for us to come off precautions. Easter happened. We were moved to one of the largest rooms on the floor. There was talk of us going home.
The first night at home was more terrifying than the first night taking her home after she was born. She had an NG-tube that we were supposed to run her feeds through. She had a broviac port in her chest to administer IV fluids if we needed. We were “trained” how to care and clean for it, but nothing ever prepared me for the nervousness I felt when we were back in Plymouth. Once arriving home, we began to accept life for it had changed in every aspect. Family, friends, neighbors kept us fed. We were able to give Laurel all of our undivided attention.
Months passed and we went through the normal protocol to treat advanced Neuroblastoma. This meant that she received 5 high doses of chemotherapy for weeks at a time. On June 12th, a 12 hour surgery removed an 8cm softball sized tumor and her adrenal gland. The next week, she completed what we thought was her last dose of chemotherapy. Laurel was on track to tackle the next part of the treatment protocol: Stem Cell Transplant.
The week before the Stem Cell Transplant, Laurel had to undergo so many tests. We learned that she lost her high frequency hearing due to one of her Chemotherapy drugs – Cisplatin. But everything else, like her vision and teeth looked great. The last test of the week was scheduled on a Friday – the MIBG scan to see how the Chemotherapy had helped her disease. It was then that the team realized that the Chemotherapy did not work; Laurel’s cancer had spread to her bone and was present in her femurs, hips, left mandible, and up her spinal column.
Whenever the oncology teams come to meet you after a scan, you know right then and there that you’re about to receive terrible news. Our doctors sat with us in a small fluorescent lighted room and told us the news. The wails and howls and cries that came from my body were primal – worse than when she was diagnosed. Brad just held me as I shook and shook. I couldn’t believe we had put Laurel through all of that horrible chemotherapy, just to learn that it didn’t help. All of the time we spent indoors in the summer when she could have been with family and friends. At the beach. With her dog and cat. In the library. Being a normal child. But no, we put her through the regimented protocol and she had effectively relapsed. The guilt I felt and still continue to feel for putting her through that – I am still trying so hard to forgive myself for it.
We took her home that night and I stayed up for days doing research. When we got home that night, my mother came over and held me for a long time while Laurel slept. She told me that we needed to come up with a plan to beat this disease and save our baby. Before long, we had second opinions from some of the top doctors about how to control her disease. After a ton of research and treatment choices, Brad and I decided to start the most promising therapy for clearing her cancer – Immunotherapy.
Our family and friends held several benefits and padded us financially for whatever was to come. Laurel went through 2 rounds of immunotherapy and her curie score (what radiologists use to determine the amount of disease in the bones) dropped from a 17 to a 9. We finally had a win. September and October were calm months. In November, Laurel got the norovirus right before beginning Immunotherapy & Radiation, which complicated things. She got weak and lost so much weight during that time. But in Laurel fashion, she pushed through, and made it out on the other end. The birth of Boden came at the time we were at our lowest and I truly believe that his presence reaffirmed Laurel’s strength to keep going. She is a big sister now and trust me, she does not take that honor lightly (I’ll elaborate more ahead).
As I type, we are about to head into our 10th round of Immunotherapy at Boston Children’s Hospital. We will have scans in a few weeks and will get another baseline for how the treatment is working, and if we need to change over to more aggressive treatment of her cancer.
So that’s where we are at medically speaking. What a year.
Some Other Thoughts:
There have been so many selfless people that have stood by us and have poured their energy into helping our family. I didn’t have to worry about meals for months between our families, friends, and neighbors dropping off food. On more than one occasion, I found muffins or fresh eggs out on the porch. Everyone has been so generous with helping us financially, it is overwhelming and breathtaking. Even the simplest deeds have brought tears to our eyes, lifted our spirits, and warmed our hearts.
Laurel’s spirit is that of a wunderkind. I would estimate that over 30 people have looked at her and told me that her eyes are that of an old soul. She trusts her doctors and nurses to pick her up, poke her, give her medicine. She offers her arm to our VNA to take her routine blood pressure 3x a week when we are home. Laurel has gone through all of this so gracefully. If you are reading this and haven’t gotten to meet her yet, I really cannot express how beautiful, sweet and kind she is. Laurel has so much to offer this world.
How are Brad and I doing? Well, I’m still trying to find my balance and where my life fits into all of this. Before cancer there was art, painting, art shows, books, beach walks, friends. This past year, I have been with Laurel every hour of every day. Time away from her feels selfish. I have to find peace in realizing that the future is unknown, and as cliche at it may be, to live and appreciate everyday I have with her. I will be honest and say there are days I can’t get out of bed. There are family and friends and people with small children that I can’t be around because they have healthy, bouncing babies. Sometimes I feel like I can’t be in this house anymore because of the memories pre-cancer. I still dream of Laurel with hair and wake up to her fuzzy bald held. The reality of her potential loss is in the back of my head everyday. But as someone I know would say – you have to put one foot in the other and roll with it. Always keep going. I am doing just that.
Brad got a job at Beth Israel Deaconess Hospital in Plymouth, MA and we couldn’t be any happier that he made this move back home. His commute is a solid 2 exits up Route 3. Gone are the days of sitting in traffic for hours making his way to Boston Children’s Hospital. Plus, he is working with adults now and no longer has to scan children with cancer (what a relief as that was torturous once Laurel was diagnosed). If there was a perfect time for him to take this job, it is now. He waited a good 8 years for this opportunity to come.
Bodie aka Bo Bo (formally Boden) has been an indescribable joyful addition to our family. Bodie is not my baby, he belongs to Laurel. She makes this quite clear. Handing me diapers, wiping his mouth, kissing his head, dancing in front of him – she is just enamored by this little man. Having a boy is such a different change of speed – he likes to grunt, fart, smile big, and yell for fun. Bo turned 3 months just recently and it is hard to picture life without him.
Big shoutout to my Mom, who is the most ferocious caring badass intelligent lady I have yet to meet. She too has experienced all of this so bravely and so deeply. Diane Teresa Riva you are my inspiration and guide. I will always model you in trying to be the best Mom to Laurel. Bodie and Laurel are lucky to call you their Noni.
And as I finish this, Laurel just woke from her nap.
On behalf of everyone who has helped us, even in the slightest way, our hearts thank you.
2018 is going to be the year that Laurel kicks cancer’s fat ass.
The Bares Family